Catching a heart defect in utero: Marco’s story

Meagan and Dante Cipulli quickly settled on a name when they discovered their third baby would be a boy: Marco, which meant God of War.

And that name would become especially apt a few weeks later. When Meagan was about six months pregnant, the couple learned their baby had a congenital heart defect called tetralogy of Fallot and would need open-heart surgery soon after birth.

“Knowing my unborn baby would need open-heart surgery after birth was the scariest experience of my life,” Meagan says. “After receiving his diagnosis, we realized we couldn’t have picked a better name for our little heart warrior.”

Finding heart defects before birth

When a second ultrasound by a perinatologist confirmed that baby Marco’s aorta was enlarged, Meagan was referred to CHOC pediatric cardiologist Dr. Nita Doshi.

Dr. Doshi performed a fetal echocardiogram, which uses sound waves to create a picture of an unborn baby’s heart.

The evaluation confirmed that Marco had tetralogy of Fallot, a heart condition comprised of four related defects that cause inadequate amounts of blood to reach the lungs for oxygen, thus sending oxygen-deficient blood throughout the body.

“I was in complete shock,” Meagan says. “As a nurse, I knew exactly what tetralogy of Fallot was and that he would need open-heart surgery.”

Planning began immediately. With the help of Dr. Doshi, the Cipullis began researching hospitals, cardiologists and surgeons who could care for Marco when the time came.

CHOC emerged as the clear choice, and the Cipullis opted for Dr. Doshi to continue as Marco’s cardiologist and Dr. Richard Gates to perform the corrective surgery.

Organizing pre- post-birth care

Meagan moved her obstetric care to a physician aligned with St. Joseph Hospital so Marco could be transferred next door to CHOC’s neonatal intensive care unit (NICU) immediately upon birth.

During a perinatal conference, the Cipullis met with the obstetrical team at St. Joseph and CHOC’s neonatal team to discuss the baby’s birth and care.

“That allowed me to have all my questions answered and gave me peace of mind that all those related to our care were on the same page,” Meagan said. “I knew that I had made the right choice after meeting with the care team.”

The remaining weeks of Meagan’s pregnancy were an emotional roller coaster. They couple prepared their older sons as best they could for what was to come with their younger brother.

And while the family was scared to not understand the full extent of their baby’s medical needs, they felt assured knowing a plan was in place.

“Each day of my pregnancy after diagnosis was filled with worry and fear, but also gratitude and hope knowing we were fortunate enough to have Marco’s diagnosis in utero and we were able to plan for his care after birth,” Meagan says.

The Cipullis didn’t have to wait long for Marco. On May 16, 2017, Marco was born five weeks ahead of schedule. After a brief rest on his mother’s chest, Marco was moved to CHOC’s NICU, where he stayed for five days.

Surgery day

Marco was back at CHOC about three months later for surgery with Dr. Gates to repair his heart defects.

 

“At first it all seemed so surreal and somehow I was able to keep it all together until the moment they wheeled Marco into the operating room,” Meagan says. “While he was lying in the crib, he looked over his shoulder and gave me and his dad this smile and look like, ‘I got this, guys, don’t worry.’ I don’t think I have ever cried harder in my life.”

The surgery went well, and Marco spent five days recovering in CHOC’s cardiovascular intensive care unit.

Today, Marco is happy and healthy 9-month-old who loves to smile and laugh. He sees Dr. Doshi every four months for follow-up appointments, but otherwise requires no additional medication or therapy.

Many babies with tetralogy of Fallot will require additional surgeries as they age, but the Cipullis are hopeful that Marco’s early interventional measures will last for many years.

Feeling positive

Meantime, the Cipullis are enjoying every minute with their three boys, and are grateful for the care they received at CHOC after catching Marco’s condition early.

Meagan recommends that other families who find themselves in similar situations be vocal about their fears, but also stay positive about their baby’s future.

“My husband and I each night would talk about what we were feeling that day,” she recalls. “At first, it was more about our fears and worries, but eventually each day we would talk more about our excitement and joy to meet our little warrior.”

Learn more about CHOC’s fetal cardiology services.